Why is accessibility such a crucial consideration of open access publishing, and how can we ensure content is sufficiently accessible?
As Simon R Stones recently pointed out in a guest blog post, the scientific community needs but often fails to consider the public in the publication plans. Accessibility is a cornerstone of the open science philosophy. A major step towards equity in research sharing is open access publishing, but its impact will be limited if the content remains inaccessible and impenetrable to the very readers who could stand to benefit the most.
Plain language summaries (PLSs) are just one method of disseminating research to the public in a transparent, accessible manner. However, patients often have no idea what PLSs are or how to find them; as Durhane Wong-Rieger explains, “You don’t know what you don’t know.” Publications can be accessed via free initiatives like Unpaywall, but patients and the general public are rarely aware that these resources exist or that open access is even an option. Durhane believes that as soon as patients become aware of open access options, they will demand access. Journals, researchers and publishers will then have no option but to move in that direction. As a fair exchange, when patients and the public participate in clinical trials, they should have the right to see the results. This sentiment was recently endorsed by joint offices of the United Nations, which stipulated that access to research and scientific cooperation is a “fundamental right of universal access to scientific progress and its applications” (see Article 15(1)(b) of the International Covenant on Economic, Social and Cultural Rights).
But what about pharmaceutical companies? Many have started to support lay language trial results summaries (which are mandated by the European Union Clinical Trials regulation 536/2014) as well as open access for clinical trial publications. Most companies typically now have transparency and accessibility policies in place and are creating activities to ensure that trial results summaries and PLSs are published, not only for healthcare professionals but for patients too. Takeda, for example, which already has a comprehensive clinical trial results summaries webpage, has seen a lot of interest in PLSs from patients and volunteers wanting to access its clinical trial results, and it is becoming increasingly clear that this interest also extends to scientific and medical publications.
PLSs need to be made easily available in a central location. For pharmaceutical companies, this could be on their website or it could be with the associated journal publication. However, not all journals offer PLS options, so the challenge for pharma is deciding where this information should reside and working together to ensure that patients, caregivers and the general public have access. In addition, standards of procedure for PLS development need to be in place because, as Valerie Philippon highlights, “One of the restrictions we have is making sure we’re applying the same rules to all the trials in making them accessible, not just the ones that look great and not the ones that failed.”
Publishers acknowledge the need for, and benefits of, PLSs and accessibility enhancements, but the challenge is for the publishing industry to embrace these processes as a whole. Some of the concerns are how publishers can implement PLS processes for hundreds of thousands of articles on a large scale and who will pay for this; very few journals have the resources for this sort of initiative. Authors are often willing to prepare a PLS but may not always have the lay language writing experience required to produce high-quality PLSs. So the question is not whether including a PLS is a good idea – this is well established – but how it can be implemented across a vastly complex and large industry and made easily accessible and discoverable. One way that Wiley is addressing this is by encouraging authors to link with a service called Kudos, which hosts and disseminates PLSs, to maximize their research impact.
This blog post was adapted from the multi-stakeholder panel discussion featuring Peter Llewellyn (NetworkPharma and MedComms Networking), Chris Winchester (Oxford PharmaGenesis and Open Pharma), Valérie Philippon (Takeda), Gavin Sharrock (Wiley) and Durhane Wong-Rieger (Canadian Organization for Rare Disorders), and reflects the views of the individuals, not those of their respective companies. A recording of the discussion is available on demand for free at NetworkPharma.tv and on YouTube.
If you’re interested in joining the open access movement or learning more about it, you can read and endorse the Open Pharma position statement here.